Back to the Beginning

Life has a way of pulling us forward and then yanking us back.

Right now, I’m being yanked.

If you need the back story to Lily’s issues, please read

The Things I Forget

Special Needs Round Two

Thoughts on a Second Diagnosis

So Many Late Night Thoughts

Lily’s pediatrician referred us to a dietician and a pediatric endocrinologist. We saw both in one day, which I don’t recommend. It’s physically and mentally draining.

A few highlights:

  • She doesn’t have any major thyroid issues. Meds may be needed in the future but not today.
  • Her pituitary gland is working fine.
  • No autoimmune issues. I’d be crushed if she did because it would be directly from me.
  • However, she’s sitting on the borderline of type two diabetes. Diabetes runs on both my and Matthew’s sides of the family. Her A1c has dropped, and it wasn’t that high, to begin with, but it would be good to work on this.
  • I turned in the OT paperwork and her dietician is signing her up for a cooking class in the spring.

Isn’t that a LOT to absorb in a few hours?

I didn’t sleep well last night at all (these appointments were on 11/12, two days before this post went up) and as Macklemore once said: “I gotta get this on the page”. For him, it means writing out a rap, I’m writing out my feelings via this blog.

I tried to relax by watching some TV and hanging out with Miss Purr, and that helped. I thought all the stress was gone and then I tried to go to sleep.

Nope. I don’t know what time I fell asleep but it was well after I got in bed around 9 PM.

It probably should have been a melatonin night.

How did she gain so much weight and I didn’t realize it? Jeez, I thought I paid more attention.

Developmental delays are forever.

You’re a crap mom for not starting the changes sooner.

How did you ignore Lily but go so hard for Julian and Cameron?

Do I even want to talk to Matthew about this? I can’t go through what went down in the beginning with Julian again. I’d walk first.

(For the record, I did tell him everything but not because I wanted to.)

These are just a few thoughts.

Trying to Not Feel Sorry for Me

I try to keep a positive outlook on life, even when I’m stressed to the max and/or angry at myself.

This gets really difficult when my brain attacks me. I already struggle with severe anxiety. It kicks into full gear when I have so much to think about.

I don’t sleep, I have a hard time relaxing. I usually don’t talk about it even though I fully know I should. The words are hard to get out of.

I try to remember that we are already making changes. Things don’t get easier overnight. It would be great but that’s not how life works.

I remind myself that Lily doesn’t have any major issues, the ones I feared. This is great.

There are three of these kids and one of me. I’m doing the best I can. I’m just not trying to do anything to make things worse for her. I guess that would mean not doing what the endocrinologist and dietician recommend.

I don’t know how I even thought that she would grow out of her delays. I guess it was wishful thinking. I’ve since realized that I was wrong and so I have to adjust my brain.

Let’s Go Back A Few Years

Julian was diagnosed in 2011 and it changed our lives.

I don’t think I forgot about Lily, but I feel guilty now for letting her fade a bit into the background. Does that make me a bad mom? Probably. Maybe not?

I’m not sure at this point.

As for talking with Matthew, that was non-existent for about three years after Julian’s diagnosis. He wouldn’t listen. He questioned my abilities as a mom, which stuck in my mind permanently.

It’s probably why all Matthew gets is facts, not an ounce of emotion. Even after therapy, I’ve had a hard time wanting to open up to him.

*sigh*

He finally got the idea because he wasn’t left with any other choices. I think that stayed with him because so far, nothing bad has happened.

I just know that I feel the same crushing guilt that I did in 2011.

I didn’t feel so much guilt about Cameron’s heart issues because we had no idea until his first episode. I do, however, feel bad for his migraines. That’s entirely from my genetics.

What’s The Plan?

Obviously, I’m going to follow the recommendations whether Lily is a fan or not.

I’m trying to keep perspective. Lily might need to drop some weight and get more active but there’s a student in my preschool class who might lose her eye due to a tumor.

This kid is barely three.

I will bawl if she does lose her eye.

The lesson?

There’s always someone who has worse issues. Lily’s are fixable. My student’s aren’t.

What else? Try to remember that I’m not as horrible as a mom as I tell myself I am and try my hardest to be patient with Lily.

Thanks for coming to my Ted Talk.